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MINUTES OF THE ANNUAL GENERAL MEETING OF THE PATIENTS FORUM HELD ON 13^th  SEPTEMBER 2001 AT THE ROYAL INSTITUTE OF BRITISH ARCHITECTS, 66 PORTLAND PLACE, LONDON W1

Present:  Clara Mackay – outgoing Chair (Consumer’s Association);  Francine Bates – outgoing Vice-Chair (Contact a Family); Eva Jacobs – outgoing Honorary Treasurer;  Saranjit Sihota (National Consumer Council); Billie Ferrie (Terrence HigginsTrust);  Geraldine Amos (Home from Hospital Care);  Jonathan Ellis (Help the Aged);  Ruth Berry (Alzheimers Society); Angeline Burke (Association of CHCs); Brian McGinnis (MENCAP); Gerry Mahaffey (Princess Royal Trust for Carers); Karen Thomson (Diabetes UK); Hew Helps (Chiropractic Patients Association); Maullellor Boudiooni (College of Health); Simon A. Williams (Patients Association); Rahana Mohammed (Long-Term Medical Conditions Alliance); Jane Shaddock (Help for Health Trust); Pam Turpin (Royal National Institute for the Blind); Jacqui Jablaoui (APEC); Rachael Kenny (Action on Elder Abuse); Judith Wardle (Continence Foundation); Nikki Joule (Neurological Alliance); Roger Battye (NAPP); Anne Montgomery (Carers UK/British Council); Imelda Redmond (Carers UK); Alison Soliman (Dementia Relief Trust); Annie Wadey ( St. Mary’s NHS Trust); Betty Copestake (Steroid Aid Group); Kathryn Shepherd (Headway); Adrian Delemore (Justice for Patients); Mario Sergides (UK Thalassaemia Society); M. Raichura (London Health Link) Diana Basterfield – in attendance. 

1.      Apologies:  Frances Blunden (POPAN); Sally Carr (CAIT); Sheila Dane (Stroke Association); George Levvy (MND Association); Gerda Loosemore-Reppen (RNID); Irene Mackay (Coeliac Society); Eve Martin (Leukaemia Care Society); Barbara Meredith (Age Concern London); Bob Sang (CAIT); Terry Simpson (UK Advocacy Network); John Tait (Relatives and Residents Association); Michaela Willmott (Age Concern England); Judy Wilson (Long-Term Medical Conditions Alliance); Marianne Rigge (College of Health);  James Appleyard (BMA); Sarah Osborne (British Dental Association); Eve Richardson (National Council for Hospice and Specialist Care); Sue Thomas (Public Health Division, National  Assembly for Wales); Penny Banks (King’s Fund); Dr Liam Donaldson (Department of Health); Sandry Gidley, MP; David Hinchliffe, MP; Simon Burns, MP; Andy Burnham, MP; John Austin, MP; Dianne Jeffreys (NHS Confederation); Gurbux Singh (CRE); Rob Thomson (Department of Health); Dr. Roger Boyle (Department of Health); David Kirby (Oesophageal Patients Association  

2.    Minutes of the previous AGM 

       The minutes of the AGM held on 23^rd May 2000 were tabled and agreed. 
      There were no matters arising.  

3.    Presentation of the Annual Report by the Chair, Clara Mackay. The Chair
       thanked Diana Basterfield, the Project Manager, for her work in producing the
       report.   

       The Chair reported that the past year had been a very exciting time for the
       Patients Forum and that she  was proud of the ambitious and effective
       programme of events.  Highlights included the February conference on
       involvement  - Shaping the Agenda – the UK Patients’ Movement - which had
       been very well-attended; the launch of the website which was proving to be a
       valuable resource, almost as much for the external audience as for the
       membership;  the presence at the Patients Forum stand at the NHS
       Confederation Conference which had been very successful and the specific
       seminars that had been held on topics like advocacy which demonstrated the
       calibre of thinking within the Patients Forum.   The members of the Patients
       Forum had many opportunities to contribute to policy but also increasingly 
       an opportunity to lead some of those discussions.

       Looking back over the year the Chair reported that the positive feedback
       received throughout the year reinforced the role and the value of the Forum
       as a network and as a structure that facilitated, supported and empowered its
       membership.   In the coming two to three years it would be necessary to
       think about how important it was to have an organisation that empowered its
       members rather than speaking over them or always on their behalf.  

       The Chair looked forward to objectives and challenges for the year ahead and
        reported that this would include building on the successes of the past year, in
        particular in bringing people together to work on policy proposals.  It would 
        be necessary to keep this in balance though so that the activities did not
        become a drain on people’s resources.     The Chair reported that the first
        seminar of the year would be held on October 3^rd with Rob Thompson from
        the Department of Health looking specifically look at the patient and public
        involvement proposals which had just been published.   The Chair stated that
        the success of the Forum in enabling member organisations to contribute to
        policy development was reflected in increasing demands being made for
        member organisations to take part in external work e.g. with the Department 
        of Health, the General Medical Council, etc.  She stated that during the
        coming year the Forum would be looking at ways of assisting members in
        responding to these demands by identifying areas of common interest so that
        people could be brought together quickly to respond to these requests.   The
        Chair added that the work undertaken on the health bill was a very good
        example of how members could work together and be powerful in what they
        could influence and change.   This model of working would again be adopted
        with the forthcoming NHS reform bill.

        The Chair anticipated that a lot of members’ time would be taken up in the
        coming year on the proposals for patient and public involvement.   She
         considered that the Patients Forum would have a critical role to play in
         helping to ensure, not just that consultation and involvement was
         crosscutting and undertaken in an appropriate manner but also to identify
         and shape the role of the new structures and to ensure that these 
         structures actually worked as intended.    The Chair added that the new
         structures would be likely to affect the future of the Patients Forum itself.  
         A meeting had been held that week between Rob Thompson from the
         Department of Health, the Chair, Francine Bates and Diana Basterfield and 
         it was clear that the Department felt the Patients Forum had an important role
         to play.  It was hoped that this would be reflected in the Department’s
         response to a request for a fourth year of funding.           

         The Chair reported on the work that had been going on to formalise the
          Patients Forum constitution and spoke of the importance of doing this in
          relation to the funding arrangements with the Department of Health.   The
         Steering Group had been working on converting the Patients Forum
          constitution from an unincorporated association to a limited company at the
          AGM but this had not proved possible in the time available.  Currently the
          limited company set up in March 2001 was still on the shelf and she
          anticipated that the necessary amendments to the Memorandum and 
          Articles of Association to reflect the functions of the Patients Forum would
          be completed shortly. An Extraordinary General Meeting of the Patients
          Forum would then be called to formally approve and adopt the new
          constitution. This AGM would, therefore, follow the rules of the Patients
          Forum unincorporated association which required the election of the Chair
          and Vice Chair and the appointment of a further eight members of the
          Steering Group.    

        The chair announced that the following members of the Steering Group had
         tendered their resignation:   

                                  Barbara Meredith  (Age Concern London)
                                 John Tait (Relatives & Residents Association)
                                  Eva Jacobs (Honorary Treasurer)
                                 Judy Wilson (Long-Term Medical Conditions Alliance) 

        The Chair proposed a vote of thanks to Barbara Meredith and Eva Jacobs for
        their considerable work and commitment to the Patients Forum in the period
        prior to the Department of Health funding and the arrival of staff.   Eva 
       Jacobs would not be continuing as a member of the Patients Forum due to
       other commitments.  Barbara Meredith would continue to be a member but
       due to work pressures would no longer produce the Policy Update.  Other
        arrangements would be made for this.   The Chair also formally thanked  
       Judy Wilson for her work for the Forum and hoped that it would still be
        possible to access her expertise.  John Tait was also thanked for his
        contribution.               

       The meeting formally approved the Annual Report. 

4.    Treasurer’s Report.  Hon. Treasurer Eva Jacobs reported on the good
       financial situation of the Organisation and recommended that there was no
        need to change the level of subscriptions. There were 60 member 
        organisations in 2000/2001.  She thanked Diana Basterfield for managing the
        accounts during the year and also Margaret Bown from Carers UK who had
        once again audited the accounts. 

       The meeting formally approved the Accounts.  

5.      Election of Officers:  Clara Mackay (Consumers’ Association) was declared Chair. Francine Bates was declared Vice-Chair.  Members of the Steering Group were approved as follows: Geraldine Amos (Home from Hospital Care); Jonathan Ellis (Help the Aged); Gerda Loosemore- Reppen (RNID); Brian McGinnis (MENCAP); Imelda Redmond (Carers UK); Marianne Rigge (College of Health); Saranjit Sihota (National Consumer Council); Karen Thomson (Diabetes UK).   

Francine Bates moved formal thanks to Clara Mackay for her year as Chair. She said it had been an astonishing year with a large number of government initiatives taking place; Clara had been responding to all these initiatives through her post at the Consumers’ Association and being pro-active as well.  In addition to this she had been leading the Patients Forum brilliantly in the view of many people, including the Vice-Chair and she felt it was great credit to Clara that the Patients Forum was now considered such a key player in the Department of Health that a fourth year of funding was being considered and that they saw the Forum as pivotal in determining the nature of the new patient involvement mechanisms.   

6.    Next year’s programme  - discussion.    It was felt that a major part of the
       Forum’s work during the coming year would be related to the patient and
       public involvement proposals.  

Date of 2002 AGM

 September 2002

 OPEN SESSION 

Guest speaker:   Dr. Andrew Fergusson, Member of the GMC Working Party on Withdrawing and Withholding Life-Prolonging Medical Treatment: “A Time to Die?” Withholding and withdrawing Life-Prolonging Medical Treatment 

Dr. Fergusson stated that he was not attending the meeting as an official GMC spokesperson although he was confident that nothing he would say would lie outside the parameters of the draft Withdrawing and withholding life-prolonging treatment through practice and decision-making document that had gone out for public consultation in May 2001 and to which over 700 individuals and organisations had replied before the close of consultation in July.   He would be working with colleagues on analysing the results of the consultation in the forthcoming weeks. 

Dr. Fergusson started with the  6^th Commandment in the Judeo–Christian tradition “Thou shalt not kill.”    He stated that euthanasia in the terms of a lethal act was illegal in the UK.   The ethical and legal position when omissions were associated with the deaths of patients was less clear, but the concept of intention was critical.   Dr.Fergusson emphasised that “intention” would be the single most important concept he would mention during his talk.    He said intention was a simple idea that related to “What?” questions.   What did the doctor mean to do when she performed the act? What did the nurse mean to do when he omitted to act?  It was not so much about motive, about what was running through the mind and heart of the carer at the time.  If the intention of an act was to end the life of a patient then that would be unethical and illegal in the case of an act.   If the intention was to end the life of a patient, that would be unethical and arguably illegal in the case of an omission.   

The key question, said Dr. Fergusson, was “What is our duty of care?”  as professionals, as family members etc.    We had to accept that life has a natural end and there was no obligation to use every possible technological treatment on every patient in every situation just because those treatments existed.   He stated that there were two causes why this fact tended to be forgotten: 

(a)    There had been an incredible advance in medical technology since the end of the Second World War

(b)    There is a denial of death in our society 

The combination of these two means that this sometimes leads to inappropriate overtreatment. 

Dr Fergusson spoke of the fear of some of his former elderly patients not being able to die a natural death.  

Dr. Fergusson stated that healthcare traditionally had two contrasting obligations, one to preserve life (and prevent death).   The other equally important obligation was to relieve suffering.   The former was to do with the quantity of life the latter related to the quality of life.    The prioritising of these two obligations depended on all the circumstances of the individual patient.  

Another key question to ask was “Is this patient in the process of living or are they in the process of dying?   If the patient was approaching the end of his natural life, so that the inevitability of death could not be postponed for very much longer, then the goal of healthcare moved away from trying to preserve life and preventing death (at almost any cost) (quantity) and towards the relief of suffering, towards palliation and towards quality of life in the increasingly precious time that remained.   

If the intention of withholding or withdrawing a potentially life-prolonging treatment was to spare the patient (and perhaps the family too) from an inappropriate burden and thereby to maximise the quality of life, that was entirely ethical and entirely lawful.   If the intention was to kill by omission, that, in Dr. Fergusson’s opinion, was unethical and, depending on the clinical issues involved, might well be unlawful as well.  

Dr. Fergusson asked whether withholding (not starting a treatment) and withdrawing (stopping a treatment that had started) were ethically different?    In his view they were not ethically different although they could feel different.   He felt this was very significant because nurses, in particular, felt that if they started a particular treatment and it did not work then taking the treatment away was much harder for them, for the patient and for the family than not doing it in the first place.  The GMC handed this specifically in the guidance because one of the problems was the difficulty of prognosis.  There was a danger of denying the patient a treatment that might work if that line were followed too far.   He stated that medical prognosis was akin to weather forecasting in Britain in that it was often right but frequently hopelessly wrong.   He added that because it was agreed that there was no ethical difference then if there were any doubt then a trial of treatment would be appropriate provided very clear goals had been agreed not just by the health professionals but also with the patient and family in terms of the length of the trial, the measurement criteria, when the trial would stop and what would be done if the trial were stopped.      Case law at the moment supported this approach.    These were clinical decisions to be made in the light of all the evidence available and they were never certain prognostically.   

The critical question was whether there was a duty to provide a treatment or not, was it in the patient’s best interests?   

Dr.Fergusson concluded by saying that the key issue about end-of-life issues was that death was not talked about in this society, it was a taboo.  He wondered whether this was because death forced people to consider spiritual questions like “Is there anything after death?” and “Where am I going?”   

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